Surviving Oesophageal Cancer

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Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.

I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.

Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.

All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.

I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.

All the best

Crystal

FormerMember over 15 years ago

Hi Crystal,
Funny you should ask if I am OK after eating - the answer is I feel uncomfortable about ten minutes after any food and seem to have a huge build up of wind (which can also prove rather embarrassing). Doesn't seem to matter what I've eaten. I am presuming this will resolve itself in time -- does it?
Have started my physio which is programmed to help mobilise the muscles which have atrophied and likewise the scar tissue and I am more mobile in arm and bending movements and so far no after effects. Will be also trying some exercises in the pool in 2 weeks time, will keep you posted.

Thanks for your feedback and help.
Chhers Ben.

crystalclear over 15 years ago

Hi Ben
The wind problem, especially burping is quite common after an oesophagectomy due to the proximity of the stomach to the throat, or because the part that controls it has been removed. For the first few months you might find you’re unable to stop it as it’s an involuntary reflex and can be very embarrassing. With practice, it can be controlled to some extent, but I’ve found it to be a long-term problem. So, I’m very choosy who I dine with Rofl.

Sometimes, the bloating you get can be gastric retention, which is the opposite to dumping syndrome in that food remains too long in the ‘stomach’, causing sickness and bloating. You’d have to get that checked out with a doctor if it persists for more than a few months.

I really admire your determination and fitness levels to be doing physio so quickly after the op, and if anyone can get back to being almost in normal health, then you will do it. You’re right about the back muscles atrophying and I wished I’d paid more attention to this earlier on.

Anyhow, it’s a beautiful day here in Yorkshire so I intend to walk in the countryside and woods later. What’s the weather like where you are? Hope this message finds both you and Sharon very well.
Love Crystal xx
Hi to everyone looking in and hoping your day is as good as it possibly can be.
xx

FormerMember over 15 years ago

Hi Crystal,

Many thanks for your feedback nice to know it's not just me! Will keep watch on the bloating problem .

Weather here is magic - 21 degrees clear blue skies and not a breath of wind (yours truly excepted!) and the Otago harbour is like a lake. Took my sister to the albatross colony this arvo and saw 3 10kg chicks and 3 adult 3metre wingspan adults soaring around the peninsular. Yesterday we saw 8 royal sponbills feeding in Hoopers Inlet just beside the road. How cool is that?
Typical late summer weather and we are so lucky to live here in down under paradise.
Cheers Ben

crystalclear over 15 years ago

Wow Ben. I’ve just done an image search of Hoopers Inlet and Otago Harbour. It’s truly beautiful, magnificent in fact. You do indeed live in paradise. Right now I’m envying my friend who is spending three months in NZ touring around. Before she left she sent me a slide show of her intended destinations, and it seems to me that all of NZ is fabulous. As I mentioned before, it was always on my intended travel list. Hopefully one day, I’ll be fit enough to visit.
Have a good evening there.
Crystal xx

FormerMember over 15 years ago

Hello All

Haven't posted for a while, but I have been keeping an eye on the board and wishing everyone well.

I am going into hospital this evening at 6pm (should have been 3.30, but hey-ho, bed shortages and all that - never mind, a few more hours at home with my lovely old man). I will be meeting up with Mr Ivor Lewis tomorrow morning.

Feeling ok now really. The worst of the fears are behind me, mainly thanks to a very nice anaesthetist whom I saw last week and who explained things really well for me. Plus the fact that I am so close to it now, that there's really not much point in being scared - I've got to get on with it, haven't I? As with the chemo, I need to get the process started so that I can see what I have to deal with.

You can all probably see right through this brave talk - I dare say I will be a gibbering wreck by tomorrow morning.......

Anyway, I'd like to thank all of you who offered messages of support and encouragement - you helped me more than you know - especially Crystal and Mick.

I will try and persuade my lovely old man John to post on here and let you know how things are going. He'll probably tell you what a ghastly and demanding patient I am being LOL

Love and hugs to all

Netty xxx

crystalclear over 15 years ago

Hi Netty
What a lovely message to us and thank you for coming on here to share your thoughts just before going into hospital. You’re a very plucky lady and I can see that you’re doing fine already.

Please ask John to come and let us know how you’re getting on, but more especially we’ll be waiting for you here to help in your recovery. You’re in the very best of hands Netty with your surgical team.
My love and prayers are with you tomorrow. Speak soon.
Crystal xx

FormerMember over 15 years ago

Good luck, we will be with you in spirit and thoughts in the coming days.

Mick
xxxx

FormerMember over 15 years ago

Hi Netty,

And hi John. All the best from down under. We will be thinking of you and here to chat to if you are up to it.
All the best.
Ben and Sharon.

FormerMember over 15 years ago

hi kazant i havent posted on here before hope you dont mind me butting in ,but my husband don is a "larry" as well 10years in fact ,however last year he got a absess on his spine near his RTsite and he was very ill he spent 6months in hospital, he lost 4 stone over that time

you say you are having problems with calories,i found that if i made my own soup and milk shakes i could put fresh cream in it, every thing had fresh cream in coffee,porridge, i even mashed cheese into his potatoes. if you get the recepies off the net for soup you can add your own bits to it ,if he has a problem with eating big lumps get one of those hand held blenders you can disguise a lot of things with them, don wont eat yogurt and fromage frai but he ate it in hospital, he didnt know it was there.

hope this will help you........ my hubby ps i post on head and neck cancer

crystalclear over 15 years ago

Hi Myhubby
Welcome to the forum and I hope you find some friends and support here. I’m afraid that there isn’t anyone named kazant on this thread, so if you click on the green Tags label on the left of this page and type in your search topic such as ‘Larynx’ for example, I think you’ll find the appropriate place to post your message. This thread is all about oesophageal cancer, however, the dietary requirements are very similar so thanks for the info.
Good luck and Best wishes
Crystal

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